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- FMA UK offers many awareness resources
Welcome to FMA UK
Site for the national charity for fibromyalgia. Working to raise awareness of the condition..png "Donate Clothes for FMA UK")
Donate Clothes for FMA UK
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FMA UK offers many awareness resources
These are distributed from our office and through support groups throughout the UKENFA Survey - Collecting Information for International Awareness Day
Please find below information regarding a survey being carried out by ENFA (European Network of Fibromyalgia Associations).
Please share this message, asking as many people with fibromyalgia to complete the survey and help provide the essential evidence required.
Collecting information for Fibromyalgia international Awareness Day 14thMay 2015
ENFAhas produced a survey to discover how fibromyalgia is treated throughout Europe. This will enable us to give evidence to the decision makers about any differences, expenses incurred and the widespread nature of the condition.
To do this we need as many people from as many different countries in Europe as possible. It will not be affective with only a few hundred responses, we need thousands!!!
Survey closes 14thApril 2015
Behind the Mask - Masquerade Ball, Manchester 04th April 2015
Margaret Probin is organising a Masquerade Ball to take place in Manchester on the 4th April 2015. She tells us why she is holding this fantastic fundraiser
"My Name is Margaret Probin. I am 34-years-old and I live in Manchester, England. I suffer from a condition called fibromyalgia. I am planning a fundraising Charity Ball which will take place on the 4th of April 2015 at the new glamorous Irish Centre in Cheetam Hill, Manchester. The charity event is called, Behind the Mask. The idea behind the name is because when someone suffers from fibromyalgia no one can tell how they are feeling inside or out. Therefore it feels like you are wearing a mask, making it difficult for anyone to see how you are feeling. This event is to highlight this misunderstood condition, raising awareness and raising funds which will go towards fibromyalgia research. The organisations I am working with are Fibromyalgia Association UK and Fibroduck Foundation.
Survey into symptoms of people with FM, CFS and IBS
Volunteers are required for a questionnaire study comparing the symptoms of people with fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome. The study is being carried out by researchers at Plymouth University.
A comprehensive survey into the symptoms of people with ME/CFS, fibromyalgia and irritable bowel syndrome is the first study to exam a wide range of symptoms of people with these conditions. The aim of the study is to find out to what extent there is an overlap in symptoms and to what extent symptoms are different between different diagnoses. Anyone with these conditions can take part, and the study is also being advertised on ME/CFS and IBS websites.
The questionnaire is completed online and is anonymous. The questionnaire asks you to rate the frequency of 62 symptoms. It takes about 4 minutes to complete, but some might take more and some less time. We need as large a sample as possible, so if you can spare the time, we would be very grateful if you could take part.
FMA UK will be provided with the results once they have been analysed.
To complete the questionnaire, please go to
https://www.psy.plymouth.ac.uk/onlineresearch/FunctionalDisorders/default.aspx?Code=xhd9G146mL
Article: The Pain Brain: Hippocampal Atrophy found in Fibromyalgia
Reduced volume in the hippocampus is just the latest of many brain finding in fibronyalgia
Read more: The Pain Brain: Hippocampal Atrophy Found in Fibromyalgia http://www.cortjohnson.org/blog/2015/02/16/pain-brain-hippocampal-atrophy-found-fibromyalgia/
Prescription Charges Coalition statement on the proposed reintroduction of prescription charges in Northern Ireland
FMA UK are a member of the Prescription Charges Coalition
The Prescription Charges Coalition of nearly 40 charities and organisations believes that everyone with a long-term condition should be exempt from prescription charges wherever they live in the UK. Currently, people with long-term conditions do not pay prescription charges in Wales, Scotland and Northern Ireland. However, the majority of those who are of working age in England are charged.
Medication is extremely important to help people with long-term conditions to manage their symptoms and lead independent lives. There is a strong evidence base which demonstrates that prescription charges act as a barrier to people with long-term conditions obtaining the medication they require. This can lead to poor management of the condition and complications that may result in greater cost to health and social services.
People with long-term conditions in Northern Ireland would be disadvantaged by the reintroduction of charges and some may be unable to afford their medicines, potentially leading to poor health, increased hospital admissions and lower productivity.
Governments can choose how to raise revenue and support the availability of specialist medicines. The Prescription Charges Coalition do not believe it is appropriate, reasonable or fair to do this at the expense of those with long-term conditions and will be responding accordingly to the consultation.
February 2015
Study to assess impact of gluten-free diet on fibromyalgia
Do you think diet could help with the symptoms of FM? Then consider taking part in this study as a step to proving this.
Are you diagnosed with fibromyalgia? Are you interested in taking part in a diet study?
A team at the University of Surrey are conducting a study to assess the impact of following a gluten-free diet in symptoms of Fibromyalgia. The study will take 6 weeks to complete. It will involve completing 3 four day food diaries and a weekly symptom questionnaire.
We are recruiting females who have a diagnosis of fibromyalgia and would consider following a gluten-free diet for 4 weeks, along with their normal diet for 2.
All data will be kept confidential. This study has received a favourable opinion from the Faculty of Health and Medical Sciences Ethics committee at the University of Surrey.
If you would be willing to take part, please contact:
Miss Tamara Fenton: This email address is being protected from spambots. You need JavaScript enabled to view it., Celia Mannering: This email address is being protected from spambots. You need JavaScript enabled to view it. or Dr Barbara Engel: This email address is being protected from spambots. You need JavaScript enabled to view it.
Pain in the Brain Study - Volunteers needed (London Area)
Volunteers are required for the Brain in Pain study which is being carried out by The Centre for Psychiatry, Barts and The London School of Medicine and Dentistry, Queen Mary University of London.
"The Brain in Pain study seeks to better understand changes in brain chemistry that might explain the pain in fibromyalgia and chronic fatigue syndrome. To do this, we are using a method of brain scanning that enables us to look at which parts of the brain and which chemicals are active during pain. The study is based in London and is actively recruiting patients with fibromyalgia or chronic fatigue syndrome who are NOT currently on ‘centrally acting’ medications (including gabapentin, pregabalin and antidepressants such as duloxetine and amitriptyline) or chronic opiate treatment. The study will reimburse participants for their time. If you are interested in taking part, further information can be obtained from Dr Bourke: This email address is being protected from spambots. You need JavaScript enabled to view it..”
Please contact Dr Bourke directly if you are interested in participating.
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Highlights
FMA on Facebook
Fibromyalgia Association UK calls for greater awareness
and education to help thousands of diagnosed patients in the UK
London, May 12th – Fibromyalgia Association UK (FMA UK) today calls upon MPs at a closed session at the House of Commons to request for greater research into the level of fibromyalgia suffering in the UK. Campaigners for the charity, predominately run by volunteers, demand a clearer assessment on the extent of the condition ahead of an official review by NICE in 2016.
Trustee meetings are held monthly via Skype and last about 2 hours. There is an annual meeting that coincides with our group leaders’ meeting over a weekend.
If your Medical Professional needs some education in fibromyalgia you can request that an FMA UK Medical Professionals Pack is sent out to them. All we need is the name of the Medical Professional and the address of their practice. We will then send a pack to their surgery addressed from us to them.
You can request a medical pack below.
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We are delighted to announce that our recent assessment for The Information Standard has been successful and we continue to fulfil the criteria for using the TIS logo on our publications.
The rigorous process that has to be in place ensures that up to date evidence is used and presented to people in an appropriate way. The process is ongoing and requires much diligence by everyone involved.
We would like to thank everyone who has worked on our publications or sent in their comments and suggestions for improvement
FMA UK is now able to receive text donations from your mobile. With our partners you are now able to send a text from your mobile to 70070 with the code of FMUK01 and your amount that you would like to donate to us. For example if you would like to donate £5 to FMA UK* you would text FMUK01 £5 to 70070. You would then be given the opportunity to add Gift Aid - meaning FMA UK benefits from an extra 25% on top of your original donation.
You can find a Support Group near you by contacting the Regional Coordinator for your area. If there does not happen to be a support group near you then maybe you can join with some other members and set one up. Support groups provide a social benefit as well as the opportunity to share tips on coping with fibro. They come in all shapes and sizes and we are often told how they have helped people.
